funtome I am so very, very sorry for your loss. Thanks Hippy for the shoutout. I am not against PM Dr's or meditation. It is everyone's free will to do what they need to do and I will fully support them. I still have very bad days (mostly bc I get lazy and hate taking the supplement lol) dumb, right?? and I to am so alone with only a neighbor to or talk to and no friends nearby. I have been vedy close to my niece 4 hours away through texting and calls, but I am so disappointed in her and hurt.

When I was detoxing, I was so low I wanted to end it. I knew she used to be into drugs for a period in her life and I texted her. She gets fibro.. the only one in my whole family, but she never texted or called after that to see how I was doing. It hurts me so bad. When someone hurts my feelings or I don't feel loved, I pull away and haven't talked to her since. After 2 yrs of not being able to work, I am so depressed.and lonely. Especially since I have always been a person that goes full speed and have always been mostly independent financially even though married for 17 years now and also in my previous marriage for 8 yrs.

I feel like such a burden to my husband and I haved cried for 2 days now. I'm crying so hard now I can't see what I am typing.

Please pray for me to get my disability. I should go in to see the judge this month or in July. My lawyer says they have a 90% success rate when facing the judge. We really need it financially. How I wish I could work and talk to people. and earn my own money!! But I got fired bc I couldn't remember the job information which was very hard for someone who could remember. Plus I was very bullied by a woman who hated another person coming in and thus she loss commissions. In the 2 years they are on my 2nd or 3rd replacement.

Sorry, I got off track, but I guess I really needed to get it out.

May all of you be blessed today whatever path you take, I support you.

Good to see you Michelle. We posted at the same time or close lol, very well put. I keep saying that I am old enough to say whatever I want, I have earned the right lol.

Plus I absabsolutely HATE liars and fake people especially . So I speak my mind and if you don't like it then you know where to go! It is my right and free speach to do so, but I really try to be supportive and helpful. You must have also caught Dr Oz yesterday of a woman who went from a c section scar tissue to oxy, flexeril., soma and Valium to herion in 6 months. The expert on addiction said pain meds have become a tsunami. And I was on ALL the meds she was plus more! The expert also said the fentanal patch is prescribed by too many Dr's now and it was meant for people who are dying only. She admitted that she was looking for a high or something to fill the void. That's what separates us CP's from the addicts. Now that I am off all the meds and my head is clear, for me I would rather have the pain then be messed up on all the meds I was on. But if someone decides to take whatever they need, I will fully support them.

Yes, that episode yesterday was what I was referring to! Both my fianc and I were both disgusted by that addiction "expert's" comments. It is exactly what you'd expect from someone who doesn't "get it." My fianc said..."what the hell does he know about living in pain 24/7?...how can he say the pain of a cancer patient is more than that of someone who doesn't have cancer? I think HIS attitude and those that think like him that is really the underlying problem and it makes me frustrated that they get the "air time" but those millions of people being undertreated or not treated at all for pain don't get any air time...for all the public knows...we don't exist. That episode showed ONE side...the side of two people who went from pain meds to heroin...which, sorry, but I don't feel that much sympathy for...they are the PROBLEM. They didn't show the side of those struggling to get help from doctors, being treated like dog poo, and, ultimately, not being treated at all or being poorly treated. I honestly believe many of these people turn to the streets for relief even though I don't know this for sure...have talked to a couple from another group who did that but it's purely anecdotal...I have zero evidence to support it. I couldn't ever do that but I can see how some people could get that desperate. I'm so thankful there's a legal supplement that has helped me. I don't know what I'd do without it. And, I agree...once I got off the medication, the "clear head," was very welcome. It was a rough, rough time going through detox...probably the worst experience of my life...especially since I was post-op from my melanoma surgery...which probably made it that much worse.

Anyhow, rambling here. Oooh, I was so fired up watching it. I honestly wished I hadn't watched the segment...to be blissfully "unaware"...it was so "in your face." I guess I consciously knew that's what people that don't "get it" thought but to actually hear it...was a whole different story. But I do feel like it's going to set things back even further than they are already. I wonder if any CP patients have emailed Dr. Oz after it? I was thinking about it, honestly. Still might...if I have enough time before I leave Sunday to go out of town for 2 weeks for work...which I am NOT looking forward to. This course is tough under the BEST of circumstances...cost and price analysis. Sigh...could use positive thoughts...pretty concerned about getting through these next couple weeks...actually, VERY concerned. :(

(((HUGS))) to all!!!

very well said Michelle. We don't exist bc fibro, chronic pain, etc. doesn't get the respect like diseases that can be proven by a test so the medical community says. It's slowly getting better, but people will never get it as long as the medical profession doesn't agree it's real and not in our heads.

Have a safe trip and don't forget to take care of yourself.

Thank you...I'm going to send you a PM so I don't "hijack" the thread with completely off topic talk.

@funtome: I'm so very sorry for your loss. Losing loved ones is one of the hardest things we go through, compounding it with cancer makes it almost unbearable...I've lost a couple close family members in the last few years to lung and liver cancer and it's not something I'd ever want anyone to have to do. I hope that you have someone with you while you grieve to support you and care for you.

OCP

Hi everyone, it has been awhile since I have been here but not because I didn't want to - was dealing with overworked stress from my job. Now I am on annual leave thank goodness.

OldCPer, I completely get what you say. I have looked at some posts before and left that discussion because I did not have anything value add and I did not need at that time to be in the negative space (if that makes sense). If I am able to offer some real information or good positive advice then I will try.

There has been the odd moment where I myself have had a vent and complained actually about one of drs and the frustration I feel at not getting anywhere. I think this was about a month ago. OldCPer I am sure it was you who posted to me saying not to take it out on the dr and that I needed to continue the relationship and work it out what it was that I needed. You brought me back to the land of rationale. If I had this vent to family or friends they would basically just go 'oh too bad'. Where as the people from this support group offer up their experience, knowledge, kindness and understanding. i may not agree with every response to my vent and that's ok. But I certainly appreciated everyone who heard me.
Strangely, I feel everyone's pain when I read the discussions and it can be exhausting. I may not be able to do much but by being here and saying 'I'm sorry for your pain and I understand' that those people feel at least a little comfort.

I hope everyone continues to post the good, the bad and the ugly and be true to themselves. The great thing is that it's in our own control what we choose to take part in.

Love and hugs to all :)

Nice to meet you NessieLeigh, not sure if you live in the south, but love that good old southern name!

I hope you and your Dr. are getting along better these days.

Have a great weekend.

OCP

Hee hee thanks OCP :)

I live in beautiful Sydney, Australia. It's rather cold here at the moment. Can't complain though - tomorrow it is 21 degrees (67F). Not bad for winter.

Getting on much better with the Drs. I am learning to use precision of language when I see them (something I am terrible at).

Hope you are going well and I love your rabbit pic.

ps - I love the South.

hi OCP,
I really had to think about your post for a few days. At first I was really offended, but now I see that you are sharing your experience your perspective.
I think I read somewhere that you has been dealing with chronic pain for 17 years. I think what you need is probably very different from what I need. I have been dealing with chronic pain for about three and a half to 4 months now. I think one of my posts I called venting so I imagine that that's one of the post you are referring to.

I have an amazing partner that she does not have with chronic pain. I only have a couple of friends in real life & they mean well but really don't know what to say when I complain. I have found that people who do not chronic pain do not understand what I am going through.

I have found that venting here and crying and being scared is ok, & then someone tells me to keep a time limit of only 5 minutes for pity parties. That's what i did and i felt better, i use that all the time now.

So what I'm saying is what helps me might not help you but it doesn't mean that it's wrong. does this make any sense?

I do pretty much work full time I even work at 1 in the morning when I can't sleep because I love my job and I love my job! so I function and smile at work all the time. I make jokes like bring on the gimp (Is that offensive ?, dear God, it's supposed to be funny !!!!!!!)

Here on DS I can be honest about my pain & my gratitude.

NY

Hmmm, I haven't seen negativity. What I have seen is people struggling and discussing the good and the bad and sometimes even the ugly. I thought this was what the board was for even if venting, or sharing good stuff, or bad. There is even a fun section of light topics.

I guess each person will find what they are looking for....

@NyGirl....

Yes people are on different paths and different parts of the chronic pain journey...personally I wouldn't wish anyone to have to do it for a long time....it sucks, but I think it sucks at any point.

Everyone has opinions and I don't believe anyone's is wrong, I'm a big believer in the right to voice an opinion...I guess I'm just more into the positive side and think that Dr's are put on this earth for a reason, without them we'd all be in a big heap of trouble....people forget that sometimes in this day and age of internet instant self-diagnosing. Once again, just my opinion.

I don't deal much with people in the Real World, they irritate me. LOL I "babysit" people at work and after doing that don't really care to do much more in my personal time than just be with myself and the things I choose to spend time doing. You are very right in that people who have never walked in the path of chronic pain, have no idea what it entails or how hard it is, they can't, it's impossible. we do it, we live it, we get it.....

Nice to get to know you, not sure what your illnesses/injuries are but hope your weekend is low pain and restful.

OCP

OCP,
I guess I don't see the negativity that you are seeing in this group. I am grateful I have a rheumatologist that believes me but she isn't here on the weekend after I have taken the humira & the methotrexate. I'm nauseas, I have the runs, I'm groggy, dizzy, the edema in my feet is so huge I can barely walk. But I am for the first time in probably 10 years HAPPY. isn't that crazy?
I did not self diagnose, the Dr says it doesn't matter what type of arthritis- auto immune disease I have because they are all treated the same way. I'm not sure I understand that, science is not my thing. I'm crossing my fingers & trying to trust her.
No one can explain how this goes. Canes, shower chairs, compression socks. Not things I wanted t I collect in my 40's. I'm afraid not to move somewhere because I am on the 2nd floor & I'm afraid I won't be able to get in my home soon.
That's it.
NY

@NYGirl:

Yeah arthritis and stairs don't go well together. I've had pretty severe Osteoarthritis for years and have always had to make sure my homes don't have stairs, my offices don't have stairs, etc. I just can't maneuver them. Several of my limb joints have been re-built with cadaver bones, screws and rods, they don't work the best.

I've done Methotrexate before and that can be a rough ride, I can imagine coupling it with Humira isn't easy. And I do understand being happy and miserable at the same time. I'm glad you have a good Rheumy that you trust. I'll admit I've never heard one say that "all are treated the same", but if it works for you that's what matters.

I've got MS as well as a Connective Tissue Disease, along with Neurological issues, low clotting factors that require platelet transfusions each month, liver disease and newly developed tumors on my one good kidney and my left lung. I kind of doze through the Dr. appt.'s unless something new is discussed.

I don't know if your doc is giving you anything for the nausea and 'runs', but I used Oromucosal (under the tongue) Zofran and Imodium to handle those things and it helped quite a lot. And the Zofran didn't make me dizzy/sleepy like phenergran and other anti-nausea meds.

I hope you have a restful Sunday.

OCP

Thanks! I forgot about the Immodium, I just took some. I'm not really sure that what my dr says is right because other people have also pointed out it can affect your lungs, and other organs differently depending on what the disease is. I would like to try to find out.

I also read that the injections for methotrexate can alleviate the stomach problems so I will ask her about that on Monday.

MS and osteoarthritis, before all of this I never really thought about what people go through. That must be tough. I'm sorry you live with such pain.

The cadaver bones makes me think of a Bones episode where they figure out the crime because of that. (is that too creepy? I love crime shows...)

Thanks OCP. It's good to get to know you!

NY